This blog was first published by Cathay Pacific inflight magazine

‘Sai Kung in the eastern New Territories of Hong Kong is a surprise, a breath of fresh air, a relaxation, a break, a quality of life; Sai Kung is coffeehouses, bars, little bakeries, eclectic eateries, seafood restaurants and al fresco dining; and beyond the town itself, Sai Kung is rugged beauty: rolling hills, uninhabited islands and white sand beaches; wild monkeys, barking deer and feral pigs, and cows that wander through the streets. Sai Kung is a world away from the picture postcard images of Hong Kong: the hustle and bustle and towering glass skyscrapers of downtown Central; the “girlie” bars of Wan Chai made famous by Richard Mason’s The World of Suzie Wong; and the madding crowds of densely populated Mong Kok.’

(Extract from The Girl Behind the Face by Rog Thomas)

 

SAI KUNG IS also where my wife Tina and I raised our daughter, Mui. We became Mui’s parents quite by chance.
 

It was summer and Tina suggested we volunteer for a couple of weeks with young children. It sounded fun. We were introduced to Mui, an abandoned one and- a-half year old Hong Kong Chinese girl with a rare deforming and life threatening skin disorder called harlequin ichthyosis. We looked forward to having Mui visit us in Sai Kung.
 

But each time we visited Mui in the hospital where she lived, she screamed and turned away and ripped off her skin, tearing out clumps of hair until she was a bloody mess. For Tina, winning Mui’s trust quickly became a stubborn battle of wills. And each time Mui would finally calm down, she was inseparable from Tina, like a baby kangaroo in her mother’s pouch.
 

It wasn’t until the beginning of the following year that this battle was won and Mui finally came to visit.
 

Twenty years ago, caring for a child who looked as different as Mui did in Hong Kong was a constant challenge: people in wheelchairs were stared at. Taking Mui outside meant walking the gauntlet of  staring and occasional cruelty: sometimes people shouting insults at us, sometimes people screaming at Mui. Once, someone spat in Tina’s face.
 

But Sai Kung has always had a strong sense of community – although connecting with the warmth and kindness of the local Chinese population meant making a bit of an effort. It began with our first ever walk through Sai Kung.
 

In the market curious Chinese women, men and children clustered round us. Tina smiled and said jo san – good morning – to the different faces in the crowd and told Mui to say hello, too. An old lady pushed forward and demanded to know what had happened to Mui. Tina told her it was a skin disorder and added, Mui’s Heung Gong yan – a Hong Kong person. The woman smiled and gave Mui sweets. Tina told Mui to say thank you and give the woman a hug, and with a hefty nudge of encouragement Mui hugged the woman, who smiled, and the cluster of people was soon smiling, too.

When we left the market Tina told Mui to wave and blow a fei man – a ‘flying kiss’ – and everyone smiled and waved and blew kisses back.
 

In the street, some people stopped stiffly, some stared silently, some screwed up their faces. Some people recoiled or jerked their heads back like they’d been scalded. We walked on and smiled at them, said hello, made eye contact and sometimes held their stare, or chose not to see them.

Treating Mui as an ordinary child seemed to put the people we bumped into in Sai Kung at ease. As she has grown up, folks in Sai Kung have tended to embrace her and regard her as a sweet and confident girl.
 

How we came to adopt this courageous little girl, how our daughter grew up to inspire ordinary men and women across Hong Kong, how she won over a British prime minister, billionaires and royalty with her dynamism and spirit, and how cyberbullies drove her to the brink of suicide – that is our Hong Kong story. We’ve shared it in a book: The Girl Behind the Face and we have now signed with a US literary agent.


If you want to help us build a platform to help individuals and families who are fighting battles no one else knows anything about, you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.

Click HERE for our website

And subscribe to our channel on YouTube: https://www.youtube.com/channel/UCxPU0NBQ4ty6pCTStBVPw0g
 

Blame no one. Expect nothing. Do something.

An afternoon in autumn, 1996… The policeman’s hand’s outstretched and raised to indicate I stop. Steering wheel gripped white-knuckle-tight, I curse, I pump the brakes. Serenely in the glowing sun and noting number plates, policemen move from car to car booking drivers one by one. Still rolling to a stop, still cursing, I bang my shoulder to the door. The door swings open. The hinges creak. Whites of eyes glow white-hot as I struggle from my seat. The officer’s face is calm and blank, a notebook’s in his hand. His lips part matter-of-factly as if about to speak. ‘NO!’ I bark, ‘you listen,’ I shout, ‘I’ve got no time for this.’ The officer’s back is quickly straight. ‘My daughter’s in the back,’ I say and jab a finger at my car. ‘She’s sick. Get us to the hospital. NOW! NOW!’ Still calm but eyes alert to me, the officer meanders round the car. He peers in. He sees Mui tightly held by Tina forlorn and tiny in Tina’s stiff embrace and barely conscious. Dried curls of peeling skin are peeling dryly from Mui’s face. ‘HURRY!’ screams Tina from her seat. The officer turns tail and runs. I jump into the car. Seconds tick-tock loudly in our ears. A pair of motorcycles roar off on either side of us lights pulsing in our windows as we roar too. At traffic lights both patrolmen beside both motorbikes block traffic and wave us through. Oblivious to sense and caution on we hurtle. No time to waste and Tina’s running from the car towards the hospital with Mui hanging from her chest to where the doctors are preparing. To where we’ll wait. Only of course, that’s not how it really happened…

An afternoon in autumn, 1996…. Mui sits in Tina’s arms barely conscious on Tina’s lap. She’s running a high fever. Rolling eyes suggest a blood infection. I’m driving and I’m cheerfully telling quirky stories while Tina sings because Mui loves it when we do. It distracts her. She vomits into a bucket on Tina’s lap.

Tina and I share glances in the rear-view mirror that betray our crippling fear. It’s the time for silent prayers. Our glances give each other strength. We continue with the cheerful, quirky stories and the songs.

Up ahead the traffic slows. Three lanes of static cars. Hard shoulder’s free. Impatient drivers take a chance and use the shoulder as a shortcut round the bend ahead. ‘Should we do that?’ ‘You think we’ll be ok if we do?’ ‘Police could be waiting round the bend.’ ‘If they book us we’ll be even worse delayed.’ ‘Then let’s not risk it.’ The traffic crawls. Minutes tick-tock loudly in our ears. Round the bend and sure enough a backed-up row of cars are on the shoulder drawing to a halt as an officer holds up one hand. Policemen move from car to car booking drivers one by one. Tina and I grin high-fives in the mirror. Traffic clears. On we hurtle. No time to waste. I pull up at the hospital. Tina’s running from the car with Mui hanging from her chest. We’ll stay nine days in hospital this visit.

When later we tell friends about the drivers being stopped and booked for taking the hard shoulder, they both look puzzled. ‘Surely the police would have waved you through. They’d have probably brought you to the hospital with an escort!’

In the autumn of 1996, Mui’s hospitalisations, her unstable health, were constant challenges but that’s just the way it was. We didn’t expect special favours, we just got on with life with a smile like everybody else. And though the challenges are different now, we still do.

If you want to help us build a platform to help individuals and families who are fighting battles no one else knows anything about, you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.

Do leave a message if you’ve enjoyed reading this, or earlier, blogs. Thanks & see you in a fortnight!

"Let’s give it a go": Raising Mui

Beside a sloping jungle airstrip in Papua New Guinea, the Australian pilot of a small light aircraft loaded with vegetables wondered out loud if my rucksack and I would be too heavy for his plane to takeoff. I’d asked to hitch a ride. He scratched his scalp with a baseball cap pushed far back on his head. He looked pensive, then shrugged, then he said: ‘Aye mate… let’s give it a go!’

I clambered onto sacks of sweet-potatoes and taro. The airstrip was hacked from dense jungle. I gazed through the windscreen ahead. Trees to the right of me, trees to the left of me, trees in front of me. Sweet-potatoes dug into my back. The engine raced, I braced on the sacks, we cleared the tree tops both grinning.

Raising Mui has been seat-of-the-pants, too.

First home visit… baths, body creams, howling screams and vegetable curry – first and last curry after changing her nappies! Or the hospital visits and her face masked by blood dried black and her stare not sad just vacant. And in Tina plunged with a cheery smile.

The rattling wheeze of Mui with a chest infection, the chattering teeth of Mui with chills and rigours, the rolled back eyes of Mui unconscious with a blood infection. At Mui’s side at home and in hospital untrained, ill-prepared and fearful, but with determination and commitment, laughter and smiles, we give it a go.

As a family we confront obstacles placed in our path. The strangers with their screams, and their stares, and their pointing and their “I think she’d be better off dead”. The ban from the school bus, the ban from the swimming pool, the ban from the restaurant, the cyberbullying, the suicide thoughts are seat-of-the-pants moments to be dealt with.

Opportunities are grasped when we’re offered them. Flights to America, a trip to Disneyland, to Europe and to Macau. The welcomes, the gifts, the warmth; the famous faces who say “hello”.

Give it a go’s meant embracing the good times with relish. Watching Tina paint pictures with Mui; witnessing Tina build Mui’s confidence to approach people in public when Mui’s instinct had been to be shy. To have Mui dive under our bedcovers eager for mornings of fun. Tina teaching her how to read stories. Me helping her speak with more clarity when her lips were for years stretched too wide. Her vocabulary had everyone purring as she learnt English with giant strides. The tingle of pride at her first solo bicycle ride: ‘I’m doing it Daddy, I’m riding!’ The frivolous jollity of shopping trips, of hikes in the mountains, of barbecues on carefree days in the sun.

Days that flash by yet are seared into the mind: I watch my train as it arrives in the station. At a window Mui kneels on her seat. When she sees me she waves like a maniac. Her eyes shout out loudly, “It’s DADDY!” The doors swish wide and she’s first from her carriage. On the platform she’s in the Olympics and her finish line will be my embrace. Her hair flies about as she’s running and she leaps for my arms in her haste. Cheerfully and loud she shouts: ‘DADDY!’ and I’m feeling incredibly proud.

There’s no shame to admit that we’re humble, but I’m proud that we “give it a go”.

If you want to join us in building a platform to raise awareness of visible differences, cyberbullying and commitment you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.

Click HERE for our website

 

Strong Women… just get on with life

‘You always judge a man by how he deals with adversity’ is a not uncommon quote.

Women though, in my experience, tend just to get on with life.

When my favourite aunt needed to get from her village to another in the 1920’s but found no means of transport, she bought a small motorcycle on the spot and rode there. She stood up to my grandfather, too, whenever he put a member of the family down. When her fiancée was killed in World War One she never married. She just got on with life.

When my grandfather denounced my mother and my father on the doorstep of his apartment in front of my mother and my brother and me, my mother wiped away her tears, came home and made dinner. She just got on with life.

The first time Mui was rushed into the hospital emergency department with a severe chest infection when we were her volunteers, a nurse told us we were not allowed to be with Mui because we were not family. Tina stood her ground for over forty minutes and refused to leave the hospital. Finally the hospital staff relented and allowed Tina onto the ward. Mui was withdrawn and small on her bed, and suffering. The moment she saw Tina, her face exploded with delight. Each time after that when Mui was rushed into hospital, Tina, for two years as a volunteer and from then on as a mother, slept on the floor beneath Mui’s bed so as to be there for her. No beds were provided, no mats were allowed. After months of hospitalizations, I convinced Tina to come home for a few hours each night to sleep before returning each following morning before dawn to be at Mui’s side when she awoke.

Johnny Depp is the parent of a child who was once seriously ill. He frequently visits sick children in hospitals. The actor says: “The kids, bless them, they are so strong… they are so courageous. But the parents are the ones who are slowly dying.”

As a father, I would never belittle the role men play in their children’s lives or in the lives of those they help as volunteers. Men do get judged on how they deal with adversity.

And women? There have been days and weeks and months of adversity as Tina and I’ve raised Mui. There still are. Yet Tina has never complained about her own needs or on what she has missed out on. She has never expected help or support. She just gets on with life, as strong women do.

She’s made me a better person. She is my inspiration.

And now there is my daughter.

 

If you want to join us in building a platform to raise awareness of visible differences, cyberbullying and commitment you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.
 

Our Facebook page:

https://www.facebook.com/GirlBehindTheFace

Do visit our website: http://thegirlbehindtheface.weebly.com

And subscribe to our channel on YouTube: https://www.youtube.com/channel/UCxPU0NBQ4ty6pCTStBVPw0g

Here's why a vote for Mui matters

When hope is done there’s always action. When action is done there’s always help. When help is done there’s always love. And come what may there’s always Mum.
How odd to watch a TV medical drama and to, in seconds, relive a moment when a preteen daughter’s body dangles grey and limp and lifeless from her mother’s arms. A moment when all hope’s extinguished – just when hope is needed most – and as her parents we both think this time our daughter’s gone.
Yet still the mad dash to find the ambulance that’s got lost; the mother’s calm refrain: ‘Please God, don’t let Mui die’; the mad dash in the ambulance to the hospital; the calm resolve of doctors doing what doctors do. Hour after hour, till finally hope seeps back and the memory gets flagged up to be suppressed.
Till unexpected moments when the memory bubbles up and briefly floods the mind. But always there is the laughter and the joking to wind the lock gates shut.
Always the morning after the night before is just another day.
Life always carries on… come what may.
Our daughter says: “I still find the idea crazy that two people who only wanted to volunteer for a short while ended up scrapping their future plans to raise me. That shows some pretty amazing selflessness. But I'm happy they did.
And I will never be able to understand how my mum and dad managed to keep me alive, especially when knowledge of Harlequin Ichthyosis was so little back then. But because of them, I’ve been able to grow up and hopefully lead a normal life. They’ve done an amazing job and even if I don't always show it, I’m lucky!”

To vote for Mui in the Spirit of Hong Kong Awards click under her photograph on this link: http://spiritofhk.scmp.com/vote

To show support and help us raise awareness, please click ‘like” on our Facebook page: https://www.facebook.com/GirlBehindTheFace

Our website: http://thegirlbehindtheface.weebly.com

Visible difference is NOT a source of entertainment

Images of people with visible differences have been stolen and used on YouTube to exploit, belittle and dehumanise in order to entertain weak-minded people. Amongst them is our daughter, Mui, who was born with Harlequin Ichthyosis and who was abandoned at birth and Hunter who was also born with Harlequin Ichthyosis. The Ichthyosis community and others with visible differences have every right to feel angry that images were stolen and used in a “shock” video on YouTube.

Mui says, ‘I don’t know what’s worse, this or being cyberbullied?’

This is why we've started this petition:

 http://www.ipetitions.com/petition/end-shock-videos

Because cyberbullies drove Mui to the brink of suicide.

Hunter says, 'I am an advocate for people with visual differences and this video does not represent anyone with visual differences in a positive light.'

Our daughter and Hunter have not been raised to be a source of entertainment for weak-minded people.

These videos are not informing or educating, they are exploiting and bullying and dehumanising. It is discrimination. Is YouTube no more than a modern-day Victorian freak show? Is this what YouTube CEO Susan Wojcicki wishes to represent?

What Susan Wojcicki and YouTube are doing to safeguard people’s rights clearly isn’t working.

Help us STAND UP against these “shock” videos by showing your support and signing this petition http://www.ipetitions.com/petition/end-shock-videos in support of Mui, the Ichthyosis community and anyone with a visible difference in order to ask: “What more is CEO Susan Wojcicki and YouTube prepared to do?”

Earth Angels and Monmouth cap – A Father’s View.

During holidays in summertime, while a student studying Economics up in London, I worked on building sites in Wales.

I meet a band of characters: brickies, chippies, gangers, engineers, architects, labourers.

One man sticks always in my mind. A labourer. A lean man, and short, and always a Monmouth cap pulled tight on his head. All bone and gristle with a grip of steel. Mixed race and rightly proud. From the docks: ‘Tiger Bay’, as if that explained everything – and it did! A wise man, too.

In the site canteen. Morning break. A hastily made homemade sandwich collapsing between the fingers of one hand. Being teased for reading A Child of the Jago and taking notes. And then a clanger dropped. My crime? Using language unbecoming of a building site! And a brickie mocks me mercilessly: ‘Disposable income! Bugger me! There’s posh you are. Disposable bloody income! Me, I calls that beer money! Disposable income? Bloody students!’

Monmouth cap smiles reassuringly. I pick up a tabloid newspaper to paw the tits and bums.

Beyond Page 3, James Brown, the Godfather of Soul’s been arrested. An innocuous crime. ‘How come a man like that can be arrested,’ I say, ‘how can that happen to such a man?’

In a Cardiff accent, soft and raw, Monmouth cap smiles at me and says in his warm calm way: ‘He’s just a man, Roger. Just like you and me.’

Endeavouring to help others by publishing a book about ourselves, revealing our private lives, is a bit like pulling down our pants in public. Privates on Parade. And parading either cowed or with the organ-proud, engorged-proud pride of the Maharaja Bhupinder Singh. Or better, somewhere in between.

Fielding phone calls from reporters; requests made for talks from schools; photographers and cameramen shooting shoots. Articles in Sai Kung and Hong Kong and in Germany, in the UK and America, too.

More than one friend’s said: ‘You guys are famous, now!’ And not all speak with grins.

On Facebook, meaning well, a woman calls my daughter: “An Earth Angel” .

I thought of Monmouth cap: He’s just a man, Roger. Just like you and me.

We three, Tina, Mui, me, are ordinary people who’ve encountered extraordinary moments Good, Bad and Ugly and have coped as best we can, as in life we all do.

Our book is about an ordinary family: “just like you and me”.

FOR MORE:

 

Do check out our Facebook page: https://www.facebook.com/GirlBehindTheFace

Our YouTube video: https://www.youtube.com/watch?v=aCXIpRNkVbw&index=1&list=FLxPU0NBQ4ty6pCTStBVPw0g

And our website: http://thegirlbehindtheface.weebly.com